A couple who were told their severely disabled baby may die within hours of being born are celebrating her first birthday.

When Sonia Morales was pregnant, her daughter Angela was diagnosed with anencephaly, a birth defect in which babies are born without parts of their brain and skull.

But Sonia and her husband Rony, who live in Providence, Rhode Island, decided to 'keep her no matter what.'

A couple who were told their severely disabled baby may die within hours of being born are celebrating her first birthday. Pictured: Sonia and her husband Rony, with Elizabeth, four, and Angela, now one

Elizabeth with her little sister. Angela has anencephaly, a birth defect in which babies are born without parts of their brain and skull - many newborns with the condition die soon after birth

Angela, who weighs only 16 lbs., celebrated her first birthday on March 23 alongside their four-year-old daughter Elizabeth.

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They were prepared that they may lose Angela from the moment she was born.

'When we went to the hospital, I thought I was going to be saying hello and goodbye on the same day,' says Sonia to People.

'We sang her a song that we made for her.

It was during an ultrasound that Sonia Morales was told her daughter was not developing properly

Sonia says her daughter is aware that her little sister is sick, but just wants to spend as much time with her as she can

Everyday the family sing a birthday song, along with a birthday cake and a prayer as they celebrate Angela's life

After her birth, doctors told the family it was a critical period, but a week later they were thrilled to bring her home.

The family have been celebrating every day with Angela since as they know life could be short for their sick daughter - they have a birthday cake and sing every day.

'Every day is truly a gift. She knows how much she is loved,' Sonia says.

WHAT IS ANENCEPHALY?

Anencephaly occurs between the third and fourth weeks of pregnancy.

During that time, the neural tube is supposed to close and fold over to form the brain and spinal cord of the fetus.

This process fails to occur in anencephalic pregnancies, resulting in the absence of a large portion of the brain, skull and scalp.

Babies born with anencephaly are usually blind, deaf, unconcious and unable to feel pain.

They are usually stillborn but in rare cases they may survive longer.

The rate of anencephaly is one or two per 10,000 births.

Sonia says her other daughter is aware that her little sister is sick.

She wrote on a Facebook post: 'From the beginning we tried to explain that her baby sister would have to go to Heaven with Jesus because her head was not fully formed. She took it in a very natural way.

'Eli was always there close to help me with her sister. Rony and I, did not want her to see Angela's head without the hat that covered the hole in her head.

'But one day I did not locked the door when I was doing Angelas's dressings and I was washing her wound. Elizabeth's first reaction is priceless, "Mami she has hair, she is beautiful!"

'Elizabeth didn't see Angela's deformity she saw her sister, she saw her beauty.

'And from that day she was the one who helped me clean the opening.

'Passing me the gloves, tape and bandages. She told me, Angela is different from other children but who cares mommy she is beautiful God made her like this.'

Angela has part of her brain missing and one of her eyes is shut, but she has made progress in the past year.

Sonia posted a video online which shows her moving her head as she calls her voice and she recognizes those familiar to her.

Although her future is still uncertain the family are making the most of their time with her and take her on family outings.

The Morales have created a GoFundMe page to help with medical expenses.

They have also made a Facebook page which offers updates on Angela's health as well as offering support to other families whose children have anencephaly.

Sonia wrote on the Facebook page: 'I am a happy mom. She gives us so much joy to our family.'

Although her future is still uncertain the family are making the most of their time with her and take her on family outings